A world of their own

Just beyond your view is the life of disability. Each family has their own storyand each situation comes with its own unique type of challenges.

The resilience and endurance of this small group of parents is astounding. The circumstances they find themselves in render them without choice They have grown a thick skin, like leather. Sometimes they barely sleep for days. They have encountered confronting diagnosis, and some are placed in a category of ‘unknown’. Diagnosis or no diagnosis, the unpredictability of daily life changes here like the weather during the wet season in the north part of Australia: it can be hot, humid and suffocating with unforeseen downpours of heavy rain, floods, spectacular electrical storms, followed by cold nights. There are also moments of sheer beauty and unconditional love. This is the life of a parent who has a child with a disability. While the range of disabilities distinctly vary, the peaks of each child brings bouts of joy and troughs of hard times. Everyone has their own unique story. On a cool winters morning, we hear only parts of the story. Judith calls it “disability world” and for these parents it is 24 hours, around the clock care.

“It is a completely different world from everybody else. It is seriously because I had zero idea of this world before my kids.”

Another mother Katie lives in this disability world. Her daughter has ADHD and her son Jayden is in the undiagnosed category.

“It does make you a recluse, progressively. You don’t realize until one day you think, oh I use to go out, I use to do things.”

“I see friends who watch Jayden and say ‘Oh he’s great, he’ll be fine, he’ll be right just give him a couple more months’ and I think no. I have specialists and heads of their fields going something is wrong. They do not understand, and you become almost resentful that they’re not getting it.”

“My son has got a list of issues. I have people that look at him when he is having a good day and they say 'he will be fine, yeah no worries', and I think no, this is half an hour that you are seeing him for and you are saying he’s fine, he has not had a problem- give them another 23 hours a day and then they have a better idea,” said Katie.

These families meet once a week at MyTime in Ferntree Gully. This non-descript building beside a suburban football oval may not look important, but the space literally saves lives. It is a vital part of the week for the children, who, for most of them, routine is crucial. For the parents and carers, it is a lifeline. MyTime was born out of a sheer necessity for parents and carers. They can attend with or without their child or children. Children up to 16 years of age can attend.

She laughs that her son’s therapist is the only adult she gets to talk to every week. The parents laugh, but as the morning goes on what they are saying is not very funny.

Judith’s son is nine years old. His intellectual ability is of a one year old. He still wears nappies and has lately got in the habit of tearing up any paper or cardboard into tiny little pieces and hiding it in various places around the house.

“I manage to deal with a lot of it but he started a new one that broke me.”

That new habit pushed Judith to breaking point and she had a meltdown. On the particular day she ran out of cleaning products. Without going into too much detail, the situation grew out of her control and she reached the end of her tether. The Crisis Assessment team followed, as did drugs and lots of therapy. Beyond that is her constant worry to pay bills and keep afloat. Lots of things fall by the wayside. Beyond that is the worry for her son’s future and her own mental well-being.

Naomi Twigg is the MyTime facilitator here. Over the course of 16 years, she has had to learn specific coping mechanisms and ways to assist those in critical need.

“You have got to grieve the expectation that you had, the expectation of what you thought your life was going to be like and then processing all of that. Most of the families that I have worked with, both sets of the parents, have anxiety or depression- a lot of anxiety though because of that worry- what’s going to happen, how am I going to deal with this for the rest of my life, how, the grief, how will my child go in this world, will they be okay, how will they go at school, how are they going to get a job, how are they going to make friends, how are they going to meet a potential partner, get married- is all of that going to happen, is it going to be okay. That’s a massive thing.”

“I can’t fix their problems, I can’t take away a lot of the issues that they have but I can let them know that I am thinking of them. I know that does not solve the problem but sometimes that is all you can do.”

The parents feel relief when they enter MyTime and know that Naomi and the other parents are watching over their children. Another set of eyes takes the pressure off and there is a window of opportunity to sit and be.

“Kids that have special needs, normal playgroups aren’t appropriate. As much as the parents don’t say it, they do judge what the kids are doing,” said Katie.

“They don’t get it. They expect normality wherever they go, and they expect that you can explain stuff to kids and that they are going to understand. Some kids do not understand,” adds Judith.

“Or they’re just not ready, or they might actually never be able to do that, and they get bigger and you have given them all the therapy in the world,” concludes Lisa.

Many parents rely on MyTime, yet it only runs for eight weeks during the term.

“It is really horrible during the holidays, everything stops, all of the playgroups and most of the therapies. It’s not like we can go on holidays,” said mother of two Shanna.

“This is our time, too. We can let the children go and play we don’t need to be there.”

Things that are genuine concern such as the NDIS coming in or dealing with an ongoing issue is open for discussion at MyTime. If someone is a step ahead and knows what’s coming they are able to share their knowledge and work through it together. When one person has access to one thing they can share it.

“It makes it a bit easier” said Katie.

Christmas can be a particularly daunting time for many families, as they face two months without reprieve.

Naomi encourages the group to catch up outside of their MyTime sessions and was overjoyed when a few people did.

“These families come from so many walks of life, so many different situations, and I respect them and I learn from them, I feel grateful for so many things in my life.”

“My job is being here and listening to them and being that shoulder to cry on and be in tune with them when they are talking to me I am listening I am fully there and 100% present with them but also knowing that I can’t walk into that river with them.”

She knows that she cannot swim out too deep with the families as she might venture too deep and go under herself, but that does not stop her concern and she often sends a text to families. She sprinkles little thoughtful messages through their lives. She places hand cream beside the sink and collects sayings and funny quotes, laminates them and pops them in a box by the kettle.

“Sometimes they will look through the box and find something that is meaningful. In there is funny quotes, silly, deep, meaningful type quotes as well and important stuff that is said in some of the quotes. What I say is find your quote, pop it in your shirt pocket for the day and think about it, reflect over it and sometimes it creates so many laughs and sometimes it is about finding something to have a smile about or laugh about, to break the tension and think about the humanity of it, the silliness of life and have a laugh.

And that’s it, they must laugh at the silliness of it, and cry at the hardship of it, and continue putting one foot in front of the other.

“When you come here it is like it’s almost freeing a little bit. Everyone understands,” said Katie.

And at the end of a hard day when their child falls asleep and snuggles into their side, they would not change it for the world.